Tuesday, April 8, 2014

Almost a year?

I thought I would share a little update on Isaac since its been nearly a year since my last post.

Isaac is 5 years old!!!!  He goes to pre-K four days a week for half a day.  He loves his teacher this year and has been lucky enough to have an aide nearly all to himself this year. His speech is intelligible by most these days - its pretty amazing to those who haven't seen him in awhile.  He still loves books and music.  He gets occupational therapy, physical therapy, speech therapy and music therapy (by far his favorite). 

He got a trampoline for his birthday last year and have been so excited to use it again since we've been trapped in the house with all this crazy weather this winter!!!  Yay for spring finally!!!!  He's on .4mg of genotropin daily.  We are set to have another sleep study in May and a revision on his VEPTR in his back in the next couple of months.  

He's into repetitive questions right now and pretty particular about his schedule.  He has a rough time with transitions but does well when he knows how things are going to go in advance.  We have had a few instances this year of hitting at school but for the most part he just resorts to crying when he doesn't get his way.  But overall he's doing well.  Those are just our areas of concern for now.    

He still has limited access to food and is only allowed to eat what we give him - so foodwise we haven't had too much trouble so far.  His weight is up this winter but once we can get more exercise that should be a lot better too.  The winter has been hard on all of us.  :)  

We have a meeting next month to talk about Kindergarten - which has us a little freaked out - but excited.  Its hard to believe how fast it all goes.  

Here are a few recent pictures:

Sunday, June 23, 2013

Wow, so its been awhile.

Isaac is doing pretty well.  The last several months have been eventful.  His VEPTR revision went great - much better than expected.  He was off Pre-K for a while just tired more and couldn't tolerate as much for about a month after (was worn completely out by preschool 3 hours a day/4 days a week, stuff like that)

We were very glad once school was out for the summer for sure!!!  He'd started to throw tantrums when he was tired and cried a lot more.  Once he got his bearings he's been back to his old wild self now that he's had some time to rest.  We are keeping him in pre-k another year next year - because I just don't think he can swing a full day of school just yet.

His new favorite thing is pretending he's Handy Manny and trying to fix things with his tools, so there are play tools everywhere, all over our house and yard, stuffed in drawers and hidden in corners.  He asks who's calling and wants to know what they want fixed, then says will they like that mommy - once he's fixed it.  Super cute.

All things food seem to be going ok for the moment - he's not really pushing us for it too much.  He's been busy busy and playing outside ALL THE TIME - so I think we are doing alright for now.  We are in sugar free popsicle bliss I think, yay summer.

We spent a week in Hilton Head in early June and the kids loved it, I'll have to post some pictures.  Isaac will be 5 this summer, Jack will turn 2 in October and Lucy is going to be 4 in January - so its been a zoo.  But I'm glad to report that things are going well.  I guess I haven't really posted too much lately because PWS hasn't been to big of a part of things lately.  So that is the best thing I could post anyways.  :)

Monday, January 28, 2013

Surgery scheduled - eek.

We are set for a complete revision of his VEPTR on February 21st.  So please keep us in your thoughts and prayers - it is his 1st revision - and it will be a pretty long involved surgery.  (oh and I'm a worrier, so setting the date it like a stopwatch for my panic)

Here's the little guy enjoying his mild winter.    

Monday, November 19, 2012

IEP & parent teacher conference

So we had our 3rd IEP for Isaac - they are adding PT and OT to the ST he's receiving at school.  This will be in addition to the therapies he receives privately (PT, ST, and OT) each week.  We are excited.  Its nice to hear them talk about his progress. 

When we bombarded them with our questions about food, they all said he's doing fine around it (and they eat family style), not trying to take other kids and so on.  They also said that there has been no aggression this year, no pinching, no biting.  They believe and I agree, its because he can communicate so much better this year. 

He also started Music therapy about a month ago, and I'm pretty sure he'd leave us for his therapist if he could.  Any lady who will play the piano for this boy has his heart forever. 

We are prepping for these food filled holidays coming up - trying to work on our game plan for all of it.  Keeping Isaac from gaining a bunch of weight before his surgery in January has us a little on edge, but we are always a little on edge I guess.  :) 

Now onto the important stuff, what should Santa bring a cute little 4 year old boy for Christmas . . .

Thursday, November 8, 2012

Isaac the ring bearer

Here's Isaac and Lucy at my brother's wedding a couple of weekends ago.  I love this picture and had to show him off!!! 

Thursday, October 11, 2012

Been awhile - eye sugery went well

Quick update  :)  - Isaac had eye surgery September 18th and it went well - his eyes are much straighter now. 

Oh and guess who is in the 75th for weight.  Yeah, Isaac is looking good.  We had his 4 year shots and he was 42 lbs and around 41 inches. 

Just thought I'd post a few pictures of what we have been up to. 

Isaac had to read Jack's books to him that he got for his 1st birthday, as they opened them  :)

Isaac's not afraid of the tigers for sure, but poor Jack wouldn't take his eyes off the tiger

Enjoying the big slide

This is what you get when you ask for silly faces . . .

We see the orthopedic surgeon next week to talk about getting a larger  VEPTR device and taking out the old one.  Just wanted to give a quick update.  He's enjoying preschool a lot this year - and really just growing into a fun little nut like the rest of our goofy brood.  :)

Thursday, August 2, 2012

Happy 4th Birthday Isaac!

  Isaac and Jack trying out the new wagon
 Isaac showing off his pirate hat
 The wiley band of misfit pirates at the party
 Isaac cheesing with Jack
Getting close to a rhino - we went to the Wilds the weekend before his birthday and he really loved it, despite the expression in this picture.  :)

Happy 4th Birthday Isaac!  The pirate party was so much fun, with all kinds of family and friends showing up.  He was in  heaven.  I know everyone says it, but I really can't believe its been four years since you showed up, because I really don't remember life without you! 

Oh and he even got to have his birthday card read on The Sunny Side Up Show on Sprout by Chica.  He thought that was pretty awesome too.   Barney said "Happy Birthday" - I couldn't top that next year if I tried.  :)